Welcome Back to “I’m Most Thankful For My Food Allergy Community” Series!
The month of November always brings about thoughts of thankfulness. Just hop over to Facebook and I’m sure that some of your friends are participating in the “30 Days of Thankfulness.” Many people talk about being thankful for their family and friends. I’m no different. I’ve been incredibly blessed by my husband, little men, extended family and countless friends. However, this month I want to focus on something else that I’m incredibly thankful for…My Food Allergy Community.
No matter how much my family and friends rallied around me after my little mens’ severe reactions and food allergy diagnosis, without the support, friendship, and help from my food allergy community I would still be lost and struggling. My food allergy peeps are the ones that truly “get it!” They’ve been there and understand the crazy thoughts that go through my head and the worry that I experience on a weekly basis. Following our first reaction, I so desperately tried to find other moms like me. But I couldn’t find any, nor could I find a support group. I would spend countless nights awake at the computer googling food allergies hoping that I could maybe find someone in the virtual world that was like me. Over the years I’ve met some pretty incredible women who also happen to be food allergy moms. Their friendships have been life-giving and many are doing some incredible things within the food allergy community. Throughout the month of November, I want to share a few with you.
Today, I’m excited to introduce you to Cindy Gordon, aka Vegetarian Mamma. Cindy is a fellow food allergy mom and blogger. I first met Cindy at the 2013 Gluten Free Allergen Free Expo in Chicago. We instantly clicked as much of our food allergy stories are similar. We’ve been GFBFF’s (Gluten Free Best Friends Forever) ever since. She is my food allergy mom life support. She will cry with me, laugh with me, and I always know that I can vent to her about food allergies because she truly “gets it!” I knew a lot about her story, but there were many of the details that I hadn’t heard. I’ll let her tell you her story followed by a brief Q&A! Please put your hands together for Cindy…
Our Food Allergy Journey
Our story actually starts with our second child Benjamin. The pregnancy with Benjamin was a rough one. I never felt good. The doctor decided to take him a bit early as I was experiencing spikes of high blood pressure. As soon as he was born, he was unhappy. He did not want to eat. No matter what we tried to feed him, he did not want to eat. Ultimately, he was a pretty unhappy baby. For 16 months he projectile vomited 3 out of 4 feedings. He had a distended belly, hives, rashes, constant blow out diapers and more. I asked a few times about a possible link to food allergies with the problems he was having, but our then pediatrician didn’t agree. He was given a diagnosis of reflux.
After struggling for so long we decided we would take matters into our own hands. We researched and found that often times flour (wheat) and dairy encourage reflux. We decided to remove gluten first. The plan was to remove it for 2 months, then remove dairy. We instantly saw positive changes when we removed gluten. His belly went down, the rash went away, his bowl movements returned to normal. Looking back many of the gluten free products were also free from nuts and dairy. We didn’t quite make it to our two-month mark, when we were going to also remove dairy.
I had just made decent gluten-free bread and served it with peanut butter. Benjamin had a reaction. It started small, like the previous one the doctor had deemed reflux laryngitis. But this time when I took him to the doctor, they wouldn’t let me leave. They were concerned about his lung; they thought it had collapsed. We were there for 3 hours and it got a touch better. His blood oxygen was low when we were there, but they said the machine wasn’t accurate.
I took him home only to turn around again. This time I took him to the Children’s Urgent Care. There they gave him more breathing treatments and medicine. They indicated that his oxygen was extremely low and I couldn’t leave with him. He needed to be transported to Children’s Hospital via ambulance. Oh, did I mention my husband was out of town traveling? Yikes! So we headed downtown, when we arrived my husband was there! He had grabbed a flight earlier that morning when I first called him and told him of the problems. We were in the ER for three hours. The doctor came in and explained that he would be taking him off the oxygen. If his levels stayed up, he could go home. If they dropped, he would be admitted.
He was gone for 2 minutes. When the nurse came back in, she quickly checked his levels. In that short amount of time his blood oxygen level dropped to 88. We were admitted and stayed in the hospital for two nights. He had breathing treatments every 2 hours. Finally, he was getting better. I asked about allergies and if they could test him. They indicated that he had too much medicine in his system. They did say that after two weeks, he could be tested by an Allergist. I learned I didn’t need a referral for that. I had previously thought I did. Lesson learned.
So he was discharged from the hospital with an asthma diagnosis. After two weeks we had him tested for allergies. I thought for sure that dairy and wheat would come up positive. However, I was completely SHOCKED when tree nuts and peanuts along with dairy came back. I couldn’t believe it. My world continued to crash in on me. He was 18 months old and nobody had listened to me before. I knew something was wrong, but nobody heard me. Because we had stayed at Children’s Hospital we were able to immediately get into a Pulmonologist for a follow up. This was a saving grace for me. I spent an hour and a half at this appointment and she listened. She finally heard my story and slowly started to help me put the pieces together. She helped me find a good allergist at Children’s who helped put even more of the pieces together. In the end, Benjamin ended up with a Dx for asthma, life threatening allergies to peanuts/tree nuts, dairy, soy, and suspected Celiac.
He is a gene carrier for Celiac and presents with some classic symptoms, however he was gluten-free before we knew how the testing worked. The medical team did not want him to go back on gluten for the actual test. I am fine with that too! As things finally settled with Benjamin, we began to worry about our older son Carson. We had no nuts in the house because of Benjamin and we worried that perhaps Carson could have developed a late onset of some allergies. We had him tested and the results were positive for almond and walnut on both his skin and blood test. He actually tested positive for dairy, but was able to eat that without a reaction.
Fast forward a few years and the kids’ “numbers” on their tests are dropping. Often times, I feel that these numbers do not mean much, but I still find hope that the numbers are getting smaller. Benjamin recently challenged dairy in the doctor’s office and passed. He was able to add that food back into his diet. Some dairy items he likes, others not so much. It has been a long rough journey filled with plenty of ups and downs. This is the first time I’ve written this much of our story. It’s actually still very hard to write. It’s still very real in my memories.
Q&A with Cindy
- Who has allergies in your family and what are they allergic to?
Two children – both life threatening allergies to peanuts and almonds. Youngest also has suspected Celiac as well as myself.
- What drew you to the Internet to share your story?
I wanted to provide a platform and community for people are affected by Food Allergies and Celiac Disease.
- What’s the biggest challenge raising a child with food allergies?
For me its fear! Fear of a reaction!
- What’s your favorite allergy-friendly product?
I would say anything Enjoy Life Foods, we use a lot of their products! Coco-loco bars are consumed daily at my house 🙂
- What’s your best advice for a mom struggling to cook for her food allergic child?
Take a step back and focus on what your child CAN have. Focus on the positive, connect with others and things will fall into place!
- Share one interesting fact about you that may or may not be related to blogging?
I have always been an advocate. Growing up I did a lot of work with adults with disabilities and eventually became a teacher/administrator in special education.
- What are you most thankful for this Thanksgiving?
My family and the special days we share together!
I hope you’ve enjoyed getting to know Cindy and her food allergy story. Cindy is one incredible lady! She has an amazing blog filled with lots of recipes. All of her recipes are gluten-free, nut-free and vegetarian. Many are even dairy-free, too! Check out her blog and follow along. You won’t be sorry!
One more thing I’d like to mention is that earlier this year she released her very first cookbook: “Gluten Free Fork!” I have this cookbook and it’s one of my favorites! All of her recipes are allergy-friendly and kid-friendly. Your kitchen ins’t complete without it. You can purchase it on Amazon.com.
If you missed the previous “I’m Most Thankful For My Food Allergy Community” posts, click here to read the stories.